The Answer to why we get GCA/PMR ? Is it all in the Stars! A Thought to Ponder if you think "Why Me !" Over this weekend.

[Blearyeyed]

This is a thought provoking post for all forum sufferers who wonder , "Why Me!!" , and desparately try to find an answer for their PMR/GCA nightmare after all those years of looking after yourself, rather than a medical one . Please pass by if it will not be use to you personally .

So, this more Cerebral question on why we get GCA/PMR came to me thanks to a collection of PMs with my chum Yellow Bluebell about our OHs , and how we are sure we are married to the same man!

As we chatted about how similar they are ( two odd socks that could make a perfect pair!) and how they have the same habit of cluttering up the dining table with model making stuff , and a total aversion to any yoghurt ( unless it's strawberry!) a grain of thought began to grow in my mind.

Perhaps they were created from the same split particle. They weren't born at the same time , but maybe something way back in Evolution , or even during the Big Bang ! means they are somehow inexplicably linked. Not just genetically, but something as far back as the matter that produced Evolution in the first place . From the refuse of broken stars! And this might explain our PMR Hell too.

We are after all created from Stardust! This isn't just some nonsense thought up by Walt Disney to sell more merchandise ( or used as a chat up line by my Physicist friends!) it is scientific fact.

So, potentially , rather than just examining our Family History , our DNA , or simple Genetics, Medical Scientists should be thinking bigger and looking way back into the Creation of the Universe ( and matter both organic and inorganic) to discover what brought us to where we are now , in 2019, suffering the horrors of PMR/GCA pain , to discover the ultimate truth about the origin of disease.

Perhaps , somewhere within the makeup of all that original " Star Refuse" hidden in vaults at NASA, there could be an answer , a weird mutation , a simple compound that could answer the cause of this horrible disease once and for all. Or at least YB and myself could find out why we are both married to a man with an aversion to any yoghurt but strawberry!

Or maybe , at least, they should start ( or increase ) their studies of the Evolutionary Pathway from the first sea creatures and Lungfish that crawled upon solid ground to discover all the answers to our Modern illness woes , PMR /GCA, and otherwise to find the Ultimate Cure.

Grab those dusty old dinosaur bones and fossils from forgotten drawers in the Natural History Museum , and start scraping off more DNA samples to see if they can spot those first mutations that started this off all along. A particular DNA strand , that only passed through certain Evolutionary Pathways through Time , and caused some of our, " Missing Link" , ancestors to carry the secret of why some of us are now suffering from PMR/GCA and other AI diseases . While others , despite their lifestyles , get off Scot Free ( Lucky Devils!!)

It made me suddenly think of the image of those Lungfish in my cartoon ( no it's not the Pred effect my mind has always been a little whimsically warped!) and wonder why they chose to crawl on land in the first place.

Perhaps they were just trying to get a bit of relief themselves from the chronic pain and bloating from eating too much kreel! Let's face it , with PMR , we have all been there , desparately willing to try anything once to try to feel a little better.

So , whose to say Lungfish IBS wasn't the original reason we all began!

Perhaps our fishy ancestors were all cursed by the origins of disease that made them clutch out for help in the first place. And maybe , I have just had a revolutionary idea great enough to add to the discoveries in Evolutionary Science!

It wasn't " Survival of the Fittest " after all ,but , " Evolution of those with the strongest urge to find a cure for their diseases and survive".

Anyway , it's Food for Thought, and if this little observation proves anything it is that PMR or GCA will make you do anything to try to take your mind off what is happening to your body. Plus , we are all probably as desparate as each other to try and find the reasons why we get it , and discover a solution to all these aches and pains.

Even imagining Lung fish with IBS!!!

At least I have found a possible cause for the uncanny similarity between mine and Yellow Bluebells husband. We were beginning to consider taking them to court for Bigamy!

Have a hopefully PMR/GCA Painfree weekend forum members .

And I hope , that although this may not have been a strictly PMR medical post you will see it as a display of the possible " Missing Link" in the question when thinking about PMR/ GCA , and , understand where I was coming from by writing it .

Hugs to all , Bleary-eyed aka Bee xx

[scats]

Surely those with the strongest urge to find a cure are the fittest....

Those most fit to survive!

[Blearyeyed in reply to scats]

Yes , we may be suffering but we must have evolved from the Great Survivors !

Isn't lovely to think how strong we are!💪💃🙆😋😂😂😂

[CT-5012]

Thanks for sharing your thoughts, you are not alone with your OHs I have a distinctly odd OH and a dining room full of stuff not only models but also bits of a 12 inches to the foot steam engine. Mostly I blame my Viking ancestors.

[Blearyeyed in reply to CT-5012]

Yes , it could be a Viking thing , at least they were great warriors so having that characteristic in our DNA will help us survive at the end of the day.

I am of course talking about the PMR/ GCA , who knows if we will all survive coping with the junk our OHs leave on the floor for us to fall over , that's a question none of us can answer!

Hugs, Bee x

[Ciar in reply to CT-5012]

That must be the reason mine has an entire basement and garage full of who knows what. He is 1/2 Teutonic and 1/2 Viking.

[Yellowbluebell in reply to CT-5012]

Read your reply to my OH and he went "WOW". I now am trying to explain just because someone else has one it doesn't mean he can !!

[markbenjamin57]

Lovely Post Bee: and of course the 64 (thousand?) Dollar question about what, exactly is / are the causes of, or contributors to our types of Auto Immune illnesses.

[Blearyeyed in reply to markbenjamin57]

If I've found it I will let you put the 64 thousand dollars on your tab!!

Thanks for the reply , hugs Bee xx

[markbenjamin57 in reply to Blearyeyed]

I'll hold you that Bee. Tedski has just ordered my ('our') new Maserati online

[Yellowbluebell]

Oh my God you make us sound like sister wives!! To be honest though our OH's are so alike it is very scary.

It woul be great to know why we got the disease but others just sail through life oblivious. My mother's reasoning is that I must have done something wrong in a previous life. Apparently that's why I went into law to atone for my sin!! If i was to suggest that my disease could be in anyway related to the beginning of life would be more than her brain and religious belief could take. I dont know why I got this but someone else didnt and from what little I know about science it may well have come from that isolated DNA strand. But whatever the cause I just wish that our knowledge of science now could cure it. Food for thought though.

As our OH's are so alike it explains why me and Bee get on, because lets face it we already have the same warped taste in men, plus she's madder than me so it makes me feel better.

I am off to just check that my odd sock is where it should be!!

Yellowblubellxx

[Blearyeyed in reply to Yellowbluebell]

Well put YB !

I am just giggling at the idea of you checking on your odd sock.

Perhaps you could explain the idea to your Mum that God gave everything created free will , and it was Nature , as it evolved that made mistakes in its Evolutionary Path and created disease.

Just wish I hadn't evolved from the Family of Lungfish with so many AI diseases.

My friends, who has a really warped way of trying to cheer me up with my illness , once said I should , "Think myself lucky ! As at least I know I am not invincible and having illnesses early on means I will look after myself more for the future , unlike the ones that live with no illness for years ,think they are fine , then have one heart attack and drop dead on the spot."

So think yourself lucky YB , all this is just Pain Training!!!

Yes ...she was lucky that this suggestion was made over the phone, xxx

[Yellowbluebell in reply to Blearyeyed]

I could do without my AI and also my mother's pious comments but it must be my punishments to have to put up with both of them at the same time. Even I couldn't gave been that bad in a previous life. But because of this disease I may become a better person and appreciate all the good things I have in my life rather than dwell on pmr.YB

[Blearyeyed in reply to Yellowbluebell]

Pretty sure being a friend to me is punishment enough for anything you did in a former life , and your should have the PMR taken away forthwith xxx

[Yellowbluebell in reply to Blearyeyed]

My friendships with you and scats are the really good things to come out of pmr.

As for my mother I am assured she has a direct line to the boss. Obviously this is rubbish because if she knew exactly what I had been up to in my 55 years let alone a previous lifenI would definitely have more than pmr as a punishment!!l

[Blearyeyed in reply to Yellowbluebell]

You don't think she has been speaking to " the Man Upstairs" to get you the punishment she thinks you deserve instead do you?

Perhaps PMR was your punishment from your Mum , get you wish she had just given you a good ticking off and chase you sit on the Naughty Step instead , even after the age of 40 ! 😋😂😂😂

[Yellowbluebell in reply to Blearyeyed]

I dont know what shes been discussing with him upstairs but he cant have spilled the beans or she would have been here on her broomstick by now!!

[Marlenec in reply to Blearyeyed]

Love "pain training"

[Blearyeyed in reply to Marlenec]

Yes it's like Brain Training , although it involves your PMR regularly hitting your around the head and body with a bumper book of Suduko!😂😂😂

[miss-philosopher in reply to Blearyeyed]

I love your cartoon and your creative mind. Keep going.

xxx Stella

[Blearyeyed in reply to miss-philosopher]

Thanks so much , nice to hear I have a creative mind rather than a wonky one.

Believe or not , the cartoon partly came from thinking about are woes but was also inspired by my MILs fish , who do get really bloated stomachs if they eat the wrong things , and then Bob about unable to swim until they get medication. They look so sorry for themselves with their fishy IBS , just like us on a bad PMR day.

Have a lovely weekend , bee x

[miss-philosopher in reply to Blearyeyed]

Thank you, a lovely weekend to you too.

[Yellowbluebell in reply to Blearyeyed]

No you have a wonky mind but people dont want to upset youxx

[Blearyeyed in reply to Yellowbluebell]

😝😜😜😋😁😂😂😂😘

[Yellowbluebell]

My odd sock needs checking on because for all I know it could be on a coach to Wales. YB

[Blearyeyed in reply to Yellowbluebell]

Mine is in front of a large stack of marking ticking and tutting , just a typical week night in The Asylum , so they must be two halves of a wacky particle , we can breath a sigh of relief that the first time we meet in person it won't be in court , at least not for charges of Bigamy anyway. Who knows what Pred Head might cause that brings us to be there instead.

[Yellowbluebell in reply to Blearyeyed]

I am not guaranteeing anything that requires me to be good. So yes it is more than probable.that we could be in court for our delinquent behaviour!!

[Hidden]

"We are Stardust. We are are Golden & We've got to get Ourselves back to the Garden"!

Great Post Bee. Dunno how you get away with the Sexism on this forum though!!

Never mind the models! My Mrs can't boil an egg!! ATB

[Blearyeyed in reply to Hidden]

Remember OH does mean other half , so we women may talk about our poor , overworked helpers a bit more than you blokes ( I think you are just all very well behaved gentleman and were taught not to say mean things about ladies by your Mum!😋😁) but we certainly don't think the female of the species are perfect too. Just practically perfect like Mary Poppins!!😋😁😂😂😂😂

But it is a lovely thought that all things are made from pieces of the stars , even if we unfortunately seem to be made from the knobbly , wobbly broken parts.

Big hug and see you in the garden our Golden Boy xxx

[SheffieldJane in reply to Hidden]

Joni Mitchell, you old hippy you.....🌼 peace man ✌️

[bunnymom in reply to Hidden]

Ah Crosby Stills Nash... Woodstock!

[pollymarierose in reply to bunnymom]

Woodstock!! Ahhh!

[Estellemac in reply to Hidden]

She doesn't need to if she has you to do it. I would never dare serve Parker an egg I boiled. I know my place in the kitchen. It's finding stuff in plain sight and the cleaning up the creative collection of products and culinary implements. We have a symbiotic relationship. That's survival of the fitted in our house. How we evolved together from the beginning of time. (1980,s)'

[Blearyeyed in reply to Estellemac]

That's lovely , yes , relationships are like Evolution , it is a matter of , " survival of the fittest" . And my male friends OH has managed to burn boiled eggs and cook a chicken while it was still frozen , then, serve it burnt on the outside and full of ice crystals . That dinner was a question of , " survival of the fittest " for everyone ( especially two hours later in the crave to the bathroom!!) 😂😂😂 xxxx

[Hidden in reply to Estellemac]

Our symbiotic relationship dates back to 1981 but no evolution here! More like revolution, every few years, as a new identity emerges in one of us!!

To give her some credit she does do the ironing & washes up every month or so!!

Cinders. ATB

[Estellemac in reply to Hidden]

You are blessed. She’s so kind. Monthly is a bit much though? Just be thankful and worship the ground she walks on daily. The revolutionary state will slowly turn in to deep seated luuurve and dependence on your amazing skills and devotion to her wonderousness.

[Hidden in reply to Estellemac]

Estelle you've been listening to too much Barry White & not drinking enough of it!

Dunno about the blessedness! Certainly a lot of wonderment!

[Blearyeyed in reply to Hidden]

I love that! and its really perceptive.

" Mini revolutions" over the years when things and circumstances change that change your feelings or need you both to adapt the roles you play.

I am going to use that phrase in future when me and my OH get to a wobbly plateau , " Dearest , we need a Mini Revolution or I'm going to push you off this cliff!"

I will get him to read this later then when he gets to the point that he wants to lamp me with a frying pan ( they always do it when they are going off the edge in EastEnders even though they never cook at home?!!) the OH will know what to say to make me change my wicked ways too.

Thanks PDog , you may have saved my marriage in the future!

Hugs , Bee xx

[Hidden in reply to Blearyeyed]

What's wrong with Eastenders!! EHH!.. WHAT! ..GIT OUT OF IT!!

You should be so lucky he knows which end of a pan to pick up!!

And don't blame me if I've saved your marriage! I have enough problems of my own!

Furthermore I hate cooking programmes & have no idea what a wobbly plateau is!

Think the pred is kicking in nicely! Looks like a typical relaxing late evening for me!

Sweet Dreams Bee

[Grants148]

Thank you Blee.a very interesting post,l am wondering if your OH’s look alike too ! xxx 😀 😀

[Blearyeyed in reply to Grants148]

No YBs looks pretty normal , you can see from the photo on her cake baking post ( clearly in disguise!!) 😋😁😂😂

As , mine , if you look at the photo on my PMR Friendly/ wildlife Spotting post looks as Nutty as me , is short , has a beard , and has been known to dress as a kilt wearing pirate!

( Clearly he has no shame and cannot be prevented from displaying his obvious quirks!)

But the thing they have in common the most is that we couldn't really cope without them.

Big hugs , Bee xx

[Yellowbluebell in reply to Grants148]

They are both in the short side but think they are 6 ft!!

[Yellowbluebell in reply to Grants148]

The sad thing about the kilt is that mine has been desperately trying to get me to agree to him having one and when we were at the Edinburgh tattoo 4 years ago he never stopped going on about a kilt!!

Like Bee says though they are both identical in being fantastic OH's.

[Rimmy]

Thanks for this thoughtful post Bee - thing is IF we didn't have what we've 'got' we wouldn't be 'who' we are - and I find it difficult to regret myself (LOL) - the whole great 'mess' of myself and I feel pretty much like that about everyone else I love or care about.

As Popeye said - " I yam what I yam..."

youtube.com/watch?v=LzHmunZ...(Not working as expected?)

XX

[Blearyeyed in reply to Rimmy]

Love it !! And totally agree , even the pain is mine and my way of showing that bit of stardust I am made of can still shine despite it and is all my own.

And perhaps we should have all eaten our spinach when we were young and we could be as strong as Popeye now too , rather than as wobbly and bendy limbed as Olive Oil!!

Hugs , Bee x

[Yellowbluebell in reply to Blearyeyed]

I hate bloody spinach!!

[Ciar]

Love that cartoon!

[Blearyeyed in reply to Ciar]

Hope it helped you raise a smile with all you are going through at the moment.

Have a peaceful and relaxing weekend , hugs , Bee x

[Slowdown]

Maybe not so much stardust as Neanderthal DNA (back to earth with a bump..)

"Being prone to daytime napping (is a) trait positively influenced by Neanderthal variants, as were loneliness, low mood, and smoking' (!! obviously they didn't have packets of fags) says The Scientist. My 2% of ancient DNA also influences the immune system in ways we don't understand yet.

Back to my cave now for a nap.

[Blearyeyed in reply to Slowdown]

Maybe that is it ! but if the Lungfish started with IBS and potential bones and muscles related issues in some strains of the Family that left the sea , it was probably full blown AI diseases by the time it reached some families of Neanderthals , perhaps that's why some of them were suffering from low moods and lonliness , the isolation of staying at home because their PMR pain stopped them joining in.

At least recent studies show that the Neanderthal society were actually Caregivers in a way that hadn't been previously thought. They looked after their old and sick ! Listen here modern Society!! They looked after each other ( rant over!, Sorry) .

Unfortunately it was also recently discovered that there was a extended period of inter breeding between Neanderthal and Habilis, Habilis , or the beginnings of Modern Mankind which is were the Ancient strains kept feeding into the gene pool . So , that could be why we are still suffering especially if we the AI sufferers all turn out to have Ancient DNA strains.

It's a theory , see l could be right! Where's my Nobel Prize , and can you give it to me in medical vouchers for a really good Rheumatologist please.

Perhaps we should report how well we feel in Neanderthal!

I am feeling about 85% Neanderthal today😥 How about you?

Hope you are feeling better and have a lovely weekend , bee x

[Slowdown in reply to Blearyeyed]

Oops, had a bit of a brain fade, back tomorrow with something approximating a thought - hopefully. Back to the cave xx

[Blearyeyed in reply to Slowdown]

Brain Fog , one of the added unwanted free gifts in the box of tricks known as PMR!

[Louisepenygraig]

Both your post and the comments made me laugh! Thank you

[Blearyeyed in reply to Louisepenygraig]

Great ! that's the best medicine to get you ready for the weekend , watch out we don't blow away again , hugs , Bee x

[Grants148]

Pleased to see our Pepperdoggie back Bee,l have been missing his posts. I hope that your OH’s have a good pair of legs if they want to wear a kilt,if not l think it best they wear trousers ! Thanks for the amusing post,we need a laugh,good medicine to ease the effects of this illness .Have a lovely weekend everyone xxx🥂🍃🌷

[Blearyeyed in reply to Grants148]

Yes , it definitely is the best medicine , it often gets rid of the pain better than the pain killers themselves.

My OH has got quite good legs so he does not look too bad in a quilt.

Plus , it is black and longer , like a ghillie / game keepers kilt , not like those short things I have seen some men wear on the TV .

Like my Nana used to say if someone wore a skirt that was too short , " Well , she didn't manage to get past the belt aisle in John Lewis , did she?"

She would say it really loud as we walked past , head held high in disgust , not caring if she got any comeback . One of those , please world swallow me up moments at the time that are very funny now.

I have even done it and said it myself!

Have a great weekend , and it's smashing to see PDog back on dry land , hopefully he will have some fun and give us all a post next week.

Take care , Bee x

[HeronNS]

Great post. Good way to start my day! On another out of this world theory - I think it isn't considered total moonshine that some of the diseases which afflict us hitched rides to earth on the debris hitting our planet continually. The ancients noted spikes in diseases after the visitation of comets.

sciencedirect.com/science/a...

[Blearyeyed in reply to HeronNS]

Ooh! I will take a look at that article thanks.

Yes , some people really pooh, pooh certain types of holistic therapies , and although some are rather bats , they shouldn't be dismissed as just " hippy nonsense " ( that is an actual phrase I once got told by a Gastric Consultant!) .

Looking further into our history , the greater Universe and ourselves probably would be beneficial in understanding the cause of our diseases and help us find additional ways to improve our lifestyles to speed up recovery and reduce the chances of us suffering with different AI diseases in the future.

Hope the box emptying isn't taking it's toll on you and you are settling in the New Home now.

Have good weekend , Bee xx

[HeronNS in reply to Blearyeyed]

Box emptying now awaiting arrival of new storage space for my arts supplies and pre-digital family photos (big chest with drawers and shelves for behind the sofa where we have masses of space). And hanging the pictures. Latter not so easy as several pieces were acquired with the actual space for them in mind, and now my spaces are all completely different, and the lighting is all completely different. So I get tired when I think about it and decide will do another day. Actually about four big cartons (not full) with framed art waiting to be dealt with, would make a big difference if I could just bite the bullet and do it!

[Blearyeyed in reply to HeronNS]

Yes , it is hard working out the right places to hang your art works in a new house .

Judging the light and how it fits in with a room and is enhanced rather than diminished by the other things in a room.

Art supplies , hey ! A woman after my own heart , as an artist myself that is one of my frustrations at the moment , not being able to work on my art .

Are all the works your own ? What sort of art do you do?

I would love to see some , if you put it up on any platforms let me know so I can take a look.

Hanging everything will take a lot of energy in mind as well as body.

I wouldn't push yourself to just do it when you feel tired or aren't inspired by the job ( unless you are absolutely frantic at the sight of the boxes andxreplied you feel worse)

I find if I try to to a job like that when I am not really up to it in body and mind it takes fivectimes as long , and then I begin to do it without thinking and am nevertheless with the results and have to move it all again anyway.

If you can , wait for chatting day when you wake up calm , and as you sit with a coffee suddenly feel inspired looking at the walls , thinking that will look great there , and there , then the job will come easily , be more fun , and most importantly PMR pain friendly !

Big hugs , Bee xx

PS : thanks for the other link 😘

[HeronNS in reply to Blearyeyed]

No, I only hung a couple of my pics in the old house, and I've left one of them, rather large, behind for my son until he paints the room a different colour. Mostly we've acquired art by local artists, nearly all original works by people I know, so that's kind of nice. In the new place I've a panel of handpainted tiles above my kitchen sink as I've lost my view out to a great yard with birch trees.... The image was stolen off the internet and is bird of paradise flowers, the right colour for the space. In the old house I handpainted twelve tiles to be scattered about in the bathroom, simple blue drawings depicting the signs of the zodiac. And above the kitchen stove in old house is a panel with a mock Moroccan mosaic. These turned out quite well. I also painted a mural on the kitchen wall, an image stolen from a Unicef card, a sunny view of steps and pots of geraniums and daisylike flowers. Never really finished it, beyond my capabilities really, but it was fun to do. I expect my son to be painting over that soon.

[Blearyeyed in reply to HeronNS]

Hope he doesn't !

So , you are a tile artist then , I love tiles and mosaic , I went to Barcelona a few years back ( definitely a job to do post PMR , the hills , they even have escalators up some !) .

We visited the amazing Parc Guell , the wonderful place created by Gaudi . Amazing , if you can ever go it's worth adding to your bucket list. The perfect place forctile lovers.

Barcelona is a city for artists, the street art is wonderful as well and all the architecture from Medieval streets right upto modern day all fit together perfectly there.

Your house sounds like it's going to be great , where are you I've forgotten?

[HeronNS in reply to Blearyeyed]

I now live in a condo. It's in Nova Scotia, a place called Dartmouth, part of "Halifax Regional Municipality". Oddly enough despite much larger rooms I find it a tad claustrophobic. I think it's because the windows are all on one side of the room as in any apartment, and I'm so used to the open feeling of our small old house. Funny what you don't know you're going to miss!

[Blearyeyed in reply to HeronNS]

That's a nice area , if I ever get on the road again it was actually on my bucket list so you never know some day , I might finally manage it and I will be able to pop in for a coffee and a proper arty chat with you x

[HeronNS in reply to Blearyeyed]

Hopefully by then the place will be fit to receive visitors.

[HeronNS in reply to Blearyeyed]

Here is another article, more info than the other abstract:

nature.com/scitable/blog/po...

[pollymarierose]

I enjoyed your theory! I'm in the US and since I was diagnosed I have been wondering about we don't hear much about pmr here? I finally read an article the other day from (if I remember correctly) John's Hopkins and they found the disease is primarily a Northern European disease. My ancestors! Maybe my little fish swam over in the 1950's!

[Blearyeyed in reply to pollymarierose]

Well it's a bit of fun but also has some legs , a bit like those Lungfish!!

Being in the US , the genetic make up of many people has strong ties to Northern Europe anyway.

And your little AI carrying fish ancestors certainly swam a long way , and made some real effort , to find a cure for all the aches and pains!!

Have a great weekend and lovely to hear from you , hugs , bee xxx

[pollymarierose in reply to Blearyeyed]

It is true that alot of our genetic makeup is of European descent, but mine is crazy rich with the genes! I'm pretty much all N. Europe (with a smidge heading to S. Europe). It is fun, the fish theory, but I am truly interested in finding out why we know less than my European friends. Plus, on the bright side, I look at this as an opportunity I've always wanted, to make friends in Europe and the UK! Have a great weekend also! I will be checking in of course! Lots of hugs!

[Blearyeyed in reply to pollymarierose]

That's a really positive attitude to have , and I am sure with all the friends you make , you will be like me and be able to do a World Tour visiting them all when you finally lay the PMR to bed, xxx

[pollymarierose in reply to Blearyeyed]

It is fun, especially when we now have Lungfish as ancestors! 🤔🤣

[HeronNS in reply to pollymarierose]

You aren't exactly alone. According to google there are over 11 million Americans with Scandinavian ancestry, and people of German ancestry are the largest single group amongst white immigrants (all Americans being immigrants except those of aboriginal ancestry).

[Blearyeyed in reply to HeronNS]

And let's not forget that many of those immigrants classed as German , Scandinavian, British or Italian , all had mixed ancestry themselves when you look back into their genealogy .

Many having ancestors that they don't even realise about from Russia, North Africa, and the Middle East. Oh , and way back a bunch of course , Lungfish who were members of the Family carrying the DNA for PMR and bloated from IBS from eating too much krill!!😋😁

[pollymarierose in reply to HeronNS]

You're right about that. I guess I just needed an answer as to why we don't hear about pmr here.At least nit much....yet. I guess it's part of the "why me?" Anyway, I'm very blessed to have to have you all!

[HeronNS in reply to pollymarierose]

Same here. There seems no way to get a support group up and running. A couple of times I've learned through the forums of other people who live not far from me and as soon as that is discovered they disappear never to be heard from again - is it me? What did I say?

And I find in conversation if one's health comes up (tends not to, I don't bring it up) as soon as you say the word polymyalgia you have to add that it's completely different from fibromyalgia which for some reason every one seems to have heard of.

[pollymarierose in reply to HeronNS]

Yes! Are you in the US?. I checked out 2 forums (the only 2 that came up) and there was nobody on it. Ever! And they do confuse fibro with pmr. Fibromyalgia seems like a walk in the park compared to PMR!

[HeronNS in reply to pollymarierose]

I don't think fibro is a walk in the park but because there's no real treatment they don't have to deal with pred effects. I'm in Canada, Nova Scotia to be specific. A few years ago a group of us tried to set up forums in both Canada and the US but we were never able to achieve the critical mass of members to make it work and both of them died out. Apparently some years ago there was a very active Canadian site, but it was long gone before I arrived on the scene.

[pollymarierose in reply to HeronNS]

Fibromyalgia has been hard. More so in the earlier days of my diagnosis. No one knew about it back then either. I even got fired by my first rheumy for still having fibro 18 months later and not responding to a muscle relaxant. But then I went to Oregon Health Sciences University and found my wonderful rheumatologist, who travelled the world educating doctors on Fibromyalgia. The first thing he reassured me of was that I wasn't crazy. Then I began to accept the disease and learned how to live with it and function pretty well. Unlike PMR, there were really no surprises with fibromyalgia. I'm learning something new about my PMR body everyday. This one's going to be a real challenge. One, I hope I'm strong enough to take on. I'm a bit scared.

[Blearyeyed in reply to pollymarierose]

You are probably going through exactly the same learning process you did in the past with your Fibromyalgia , it certainly reads like that in your story.

The good thing is though that you clearly learnt all the skills to adapt and accept your challenges with Fibro , and it's made you strong enough mentally to put the same skills in to practise to cope with your new health challenges now. xx

[pollymarierose in reply to Blearyeyed]

I thought about that. Fibromyalgia was hard for the first few years until I learned how to adjust to it. I had the spoon theory in my head (even though I didn't know what to call that theory). And I couldn't explain it to friends or family. I don't look sick so therefore I must not be sick. So, I had this disease pretty much all by myself and learned how to hold it inside. I hardly complained.

With PMR, I'm going to have to learn to adjust. What scares me, and also what the difference is, is it's not just my muscles and can't be aided with muscle relaxers and exercise. It's GCA, blood pressure, flu like symptoms, not being able to walk or lift things on certain days, having limbs so tired and weak that I couldn't bear to have them. It's worrying about losing bladder control, prednisone and side effects. The list goes on, doesn't it? At least now I have the support of my friends and family. So, I think you're telling me I'm strong enough to handle this new challenge in my life. I've just not convinced myself yet. I'll hang in there as long as I have you all to hang on to 💖

[Blearyeyed in reply to pollymarierose]

Absolutely , we are all hanging in there together . Like wet socks drooping on a washing line sometimes but we hang in there just the same.

I know you have it in you xxx

[pollymarierose in reply to Blearyeyed]

😉🌷

[PMRpro Ambassador in reply to pollymarierose]

Have I given you this link? Can't remember...

healthunlocked.com/pmrgcauk......

[Blearyeyed in reply to pollymarierose]

Oh it's like chickens and geese , they can both have there bad sides at the extreme , and it's not great to have to deal with two nerve and muscle based diseases at once.

They all seem to bash into each other at once , like naughty , spoilt children trying to tussle for attention , making each other worse , and more noisy , and horrible to have around in the process.

It can be hard to work out which attention to give to each disease to help improve it while not annoying the other .

[Blearyeyed in reply to HeronNS]

That's a shame , it's definitely not you , your lovely!😘

[HeronNS in reply to Blearyeyed]

🤗

[PMRpro Ambassador in reply to pollymarierose]

A lot of the research on PMR was done in Olmsted County, Minnesota

[Blearyeyed in reply to PMRpro]

Yes they might do the research in the US but oddly it doesn't seem to filter through to the people that really need it.

Of course , it did take people like you and PMR/ GCA UK to help build the awareness of the illness over the years, and try and get the information out there , over herein Europe too.

And still our GPs are oblivious to what to look for ( and don't often try!) when it comes to AI diseases , even if they are actually becoming more common like PMR.

[pollymarierose in reply to Blearyeyed]

You said it exactly! 😃 Thank you for putting it in terms that I couldn't !

[pollymarierose in reply to PMRpro]

I noticed that but I'm still wondering why we don't hear about it that much, at least at the time. I remember in the 80's, being diagnosed with fibromyalgia. Doctors thought it would be gone in 12-18 months. Here I am 30 years later.....still have it.

[Blearyeyed in reply to pollymarierose]

Yes it's taken them a hell of a long time to learn the truth of that disease too.

And yet still most GPs don't fully research or understand all the different elements of Fibromyalgia and where it can affect the body , and Rheumatologists will use it as a sort of " throw away" diagnosis ( quite often misdiagnosis !) because they don't really understand it either.

If you have Fibro , you are often left in PMR for longer than you need to be if you get PMR , because GPs will use it as an excuse for any of your aches and pains and won't investigate further , they just hope if they keep increasing the opiates the pain will go. And many poor people are diagnosed with Fibromyalgia and suffer for a while with PMR because they might not have had the right inflammatory markers on the day .

PMR and Fibro are no joke for sufferers and are doctors should all learn more about them and theft hints they can inform us about in how to manage it.

Luckily we have reached other here. xxx

[PMRpro Ambassador in reply to Blearyeyed]

You know the guy who described fibro originally has said he regrets it? It is a real diagnosis and possibly a/i - but it been abused and misused to get rid of patients where their doctor can't be bothered to think about the diagnosis. You can't cure, there are limited options to help the pain - send the patient away and you won't be bothered again.

[PMRpro Ambassador in reply to pollymarierose]

I think some doctors can't face admitting that they are not infallible and that they can't always cure you. I suspect that is why too many rheumatologists score a dismal fail in dealing with us - they go into rheumatology because they think it is 9-5, Mon-Fri, few emergencies, quiet life. And then they discover they can't cure anyone - and they think that is failure. And eventually they can't cope with that and switch off.

[Blearyeyed in reply to PMRpro]

Spot on , too many throw away diagnoses in the hope they can just discharge back to the GP and think they can call it a score on the board.

And far , far , too many Doctors in all fields leaving you up in the air with no diagnosis at all , or bad after care , because they are too scared of losing face if the admit they don't know everything , when in fact the best Doctors , especially those at the top of their fields are actually those who realise admitting the lack of knowledge and asking for help isn't a slur on their professional integrity , it actually proves their professionalism.

Gosh , who would have thought a cartoon of two pain addled Lungfish would have started so many interesting , and relevant debates today , on lots of aspects of PMR and other diseases . It's feeling like a really good therapuetic conference , great stuff!!

[pollymarierose in reply to PMRpro]

I think you're absolutely correct in that theory! 👌😊

[Estellemac]

Twins from another universe? Sent to earth to observe the species humans call woman? Those who sent them did not the consider the twain would be compared here on earth through spousal interactions.

[Blearyeyed in reply to Estellemac]

I am printing that off , and , with some cartoon drawings of mine and YBs husband , I am going to put it on a pair of t-shirts for them both . Utterly hilarious , thank you , can't stop smiling ( must be my inner sci to geek getting the better of me , or the Pred!!) . 😂😂😂😂😂😂😂😂😂😂😂 xxxx

[Estellemac]

I think the real true answer is 42. Ford Prefect agrees.

[marigolds]

I am seeing a bowel consultant in 2 weeks time and am worried he will not understand PMR/GCA and say "it's nothing to do with that" and I know that it was involved!

[Blearyeyed in reply to marigolds]

Yes , it is a worry but it's best to be calm as you can for any appointment and just take you own file if notes on your history and PMR with you so you can show new doctors.

I always start with a question , " Do you already see patients with PMR or GCA ?"

If the answer is yes , it's a good start.

Next question " So do your other patients with PMR / GCA have similar problems to me ?"

It gets them to remember what they are dealing with and lights the right light bulbs in their mind so they are more in tune with you and your other health issues before they start making decisions.

Then with any decisions they make on drugs I repeat the same question.

" So is that alright for me to do ( or take ) with PMR/ GCA and my current drugs"

It helps them to remember to consider your main health issue while dealing with their department , as they often get tunnel vision unless you remind them what they need to consider.

Take care , keep calm , write any questions you want to ask on a pad so you can tick them off and won't forget them. Write down the answers so you can look at them in the quiet later on , we can get flustered in appointments and forget things. And ask them to send you a copy of the clinic letter at the end , it's you right to get one and it helps you know what's going on.

Hugs , Bee x

[Blearyeyed in reply to marigolds]

If you have already written a post on your bowel symptoms let me know and I will add some of my tips in it.

Otherwise , please write a quick post saying what you are going through and what they think it might be.

Then I can add my tips , but all the other experts and forum members can add their experience and help in to .

Then along with your Bowel Specialist perhaps we can all help begin to get better.

Take care and let me know about your post. Hugs , Bee xx

[marigolds in reply to Blearyeyed]

I found your replies very helpful and will start writing notes and have taken onboard your experience and advice. I did write a post called belly button I think. Will update it. Hugs back. Beryl xx

[Blearyeyed in reply to marigolds]

I will look for it and your update when you get it up thanks , and add any tips and tricks I use to ease my own IBS and bowel issues on it for you in case they help.

Take care , Bee xx

[Grants148]

Hi marigolds,l believe you are right,l get IBS when l have a flare up of PMR ,and am having to always be careful not to eat certain things most of the time,l did not have a problem before PMR and could eat anything l wanted ,and the pred.,does not help either.l have stopped drinking coffee now and certainly avoid fizzy drinks and wine,fruit is limited,citrus fruit especially .l hope everything goes well for you when you see the consultant.ATB x

[marigolds in reply to Grants148]

Thank you for your help xx

[Grants148]

Thanks Blee for starting all the interesting conversations here,l would love to see those T shirts you are doing for the OH’s,maybe they could model them wearing their kilts as well ! xx❤️

[Blearyeyed in reply to Grants148]

Watch IT , YB will be after you with that suggestion she is still trying to stop her OH having an excuse for a kilt , but he will need one now for that modelling session.😋😁😂😂

Thanks to you , and everyone else, for taking part in the discussions on this post.

I am amazed, it has provoked so many different interesting conversations on all our different thoughts on why we have PMR / GCA and our other symptoms.

It's felt like taking part in an online conference , which is brilliant and so informative for the daily fight against this illness .

And all on the back of a cartoon of two suffering Lungfish !!

Hugs , Bee x